A survey of mothers of children with Down syndrome adds to the research finding a Down syndrome diagnosis is a “flash bulb memory,” one remembered in vivid detail years and years later. How that diagnosis is delivered affects mothers’ flash bulb memories.
Cynthia P. May, Anthony Dein, and Jaclyn Ford set out to study “flash bulb memories” or “FBMs” in the medical context. Culturally, FBMs are associated with, usually, traumatic events, such as the 9/11 attacks and the Kennedy assassination; those “I remember where I was” generational moments.
In the medical context, FBMs can occur with the delivery of diagnoses. The researchers picked the delivery of a Down syndrome diagnosis as a “A handful of studies have examined parents’ interactions with medical staff at the time of a Down syndrome diagnosis, and the evidence suggests that parents’ perceptions of those interactions are more often negative than positive (Goff et al., 2013; Skotko, 2005), with parents reporting a lack of compassion on the part of medical staff, pressure to terminate their pregnancies, low expectations for their children, and a lack of information provided by medical staff about the diagnosis (Goff et al., 2013).” (I summarized the Goff study here).
The researchers recruited via on-line support groups over 300 mothers who had received a diagnosis of Down syndrome for their child. From the study:
“Some mothers reported positive experiences:
Example []: ‘Our doctor quickly connected us with two other families with young ones with DS from his practice. My friendship with those two moms continues to this day.’
However, the majority of mothers reported negative experiences:
Example []: ‘The high-risk doctor did an ultrasound …he determined that my child was “not a keeper” as this child had Down syndrome and a heart condition. He probably would not survive birth and if he did then wouldn’t live long afterwards. He had a long discussion with me telling me every bad thing that he could think of and to inform me that my child will be a “burden to society and my family”. He also included that 70 per-cent of fathers of children with disabilities leave the family and the cost of my child will be hard to afford.
Not surprisingly, “individuals who had more support from medical staff were less likely to report negative emotion.” Just reviewing the two examples, it is easy to see why the latter would vividly stick in the mothers’ memory as a negative memory, just as the former is a vividly positive one.
The authors highlighted this finding of how the level and kind of support provided with a diagnosis effects how mothers’ recall when they received a Down syndrome diagnosis:
our study demonstrates that how the information is received plays a significant role in the formation and duration of FBMs. Mothers who perceived greater support and received positive information about Down syndrome from medical staff experienced less negative emotion as they recalled their diagnosis experience. This decrease was not necessarily associated with the event becoming positive, as a child’s medical diagnosis is unlikely to be experienced as a positive event, but it helps reduce negative affect so that it is more subjectively neutral.
In an article the researchers wrote for Scientific American, they conclude: “One of the essential ethical standards of the Hippocratic oath is to do no harm. Our findings suggest that in adhering to this tenet, health professionals should focus not only on the medical procedures and treatments provided to people but also on the way patients are informed about their health and what the future might hold.”
Causing harm
Since Dr. Skotko’s article in 2005, each successive survey of moms has found the same as he did years ago: that a Down syndrome diagnosis creates a flashbulb memory for most mothers and, for most, it is a negative memory due to inaccurate information and minimal, if any, support resources accompanying the diagnosis from their health care provider.
Yet, the American College of Obstetricians & Gynecologists’ most recent guidelines recommending offering all prenatal genetic testing to expectant mothers lacks any direction in how to deliver the test result with what accompanying support resources. Instead, it refers to a committee opinion on delivering test results, which even that lacks specific reference to identified support resources–resources that ACOG had recognized in previous iterations of its guidelines.
The Hippocratic Oath, notwithstanding, studies on the administration of prenatal genetic testing has only and always found that it instead causes harm to mothers receiving a diagnosis. Just as frustrating is that for years there have been published guidelines on how to deliver a pre– and post-natal Down syndrome diagnosis from Dr. Skotko and his team of researchers, with specific resources identified in the guidelines of the American College of Medical Genetics, and with the National Society for Genetic Counselors creating an easy to reference fact sheet, listing these supporting resources.
The researchers of this most recent study even reference an article of mine detailing the legislative efforts at the state level requiring the provision of written information and referral to support organizations. However, these legislative mandates are honored more often in the breach, and out of ignorance, than abided by.
If ACOG were serious about doing no harm and improving women’s health outcomes, it would include these recognized, easy-to-use, easy-to-reference, Down syndrome resources and require they accompany a pre- or post-natal test result.
But ACOG’s most current guidelines do not. And, more mothers will be traumatized as a result.
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